That's interesting. Could you expand on this? Did you take NSAIDs at the start of illness. What where the symptoms you experienced? I got a stomach ulcer after taking high dose NSAIDs at the start of my illness, the ulcer went away a few weeks later.
I believe the NSAID enteropathy is incidental to my illness. I've been ill since 1993 but this problem started 4-5 years ago. At one point a few years ago, I discovered that I could reduce my continuous high pain levels by about half by taking around the clock a "maximum safe" dose of ibuprofen: 800 mg three times per day, or 2,400 mg per day. I, like most everyone, including most physicians, was unaware of the risk to the small intestine from NSAIDs. I had an ulcer in medical school from taking ibuprofen, so I decided I would be "smart" and take hydrochloric acid suppressors with my NSAIDs. For a long time, I took a proton pump inhibitor (e.g. Prilosec). Later, when I read that chronic PPI use can cause problems, such as increased risk of H. pylori and gastric cancer, I switched to ranitidine, an H2 blocker. It worked; I didn't get any stomach or duodenal ulcers.
After maybe 2 years of taking ibuprofen and H2 blockers I had to go to the hospital at one point because of severe abdominal pain. No the pain wasn't coming from my stomach or intestines. After an extensive workup I was diagnosed with Sphincter of Oddi Dysfunction (Type II). This is a very painful spasm of the sphincter that regulates bile and pancreatic juice entry into the upper small intestine. It usually happens after gallbladder resection, but I never had my gallbladder removed. Well, anyway, while I was there, it was noted that I was very anemic. So, I got to stay an extra night to get an upper and lower endoscopy, looking for the blood loss. Nothing found: no ulcers in my stomach, no bleeding polyps or other badness in my colon. Next step: video endoscopy, otherwise known as the PillCam study. This is pretty cool: you swallow a camera the size and shape of a large capsule. It's activated just before you swallow it and you wear a device to pick up its radio-transmissions of photo it takes of your innards for 8 hours. Later you poop it out and flush it away (only I saved mine...)
The pictures showed my small bowel was full of ulcers and strictures. These strictures look like little diaphragms across the lumen of the small bowel, with a hole in the middle of varying sizes. Here's a picture of what this looks like. If you look closely, you'll see a little bleeding lesion at about 2 o'clock on the opening in the stricture shown:
Note that I did not have any idea this was going on. It was not in the least painful. The strictures are problematic for me because sometimes, if I overeat, I will get a partial small bowel obstruction (nausea, vomiting, sevre bowel swelling, and inability to eat or drink for several days). Before the diagnosis I thought these episodes were due to food poisoning. But, aside from those very infrequent (thank God!) episodes, this syndrome is asymptomatic except for the bleeding causing iron deficiency anemia. It got so bad that I needed 4 blood transfusions last year, and still need periodic iron infusions. I test my stool for blood periodically and, although the bleeding is far less than last year, it persists. I stopped taking NSAIDs entirely about 1 1/2 years ago. Before that, I'd quit ibuprofen in 2015. I started taking Celebrex occasionally in 2017, thinking it would be less likely to cause a problem, especially only taken occasionally. Well, wrong: it definitely made the bleeding worse. But, still, I stopped NSAIDs 18 months ago and I'm still bleeding.
Last year, I had a repeat PillCam study. What fun: this time the camera got stuck in me! One of the strictures wouldn't let it pass. My GI doc freaked out: kept threatening me with surgery. Thankfully, someone suggested a different approach. I had to travel to Phoenix (120 miles) to get a "double balloon enteroscopy". It didn't work, but I came back to try again from the other end and the fabulous doc snared the thing!
In my work as an anesthesiologist, I see a lot of folks with iron deficiency anemia of unknown cause. Unknown, because no one has bothered to look further after negative upper and lower endoscopy. These are patients in chronic pain, almost certainly taking NSAIDs. I'm willing to bet that they have NSAID enteropathy, and they need a PillCam study to find it. I found, in reading the literature, that it is likely that NSAIDs more frequently cause small bowel injury than stomach ulcers. Apparently, a single dose of an NSAID increases small intestine permeability. Different papers say different things about whether some NSAIDs are excluded from this effect, but my conclusion from reading them all is that all NSAIDs, including aspirin and celecoxib (Celebrex) can. The most appalling thing to me about the general lack of knowledge of this syndrome is that it has been known at least since the early 1990s. Before video endoscopy, double balloon endoscopy, which is so difficult that hardly anyone does it anymore, was needed to see the inside of the small bowel, so the frequency of NSAID enteropathy wasn't known until about 10 years ago. But now there really is no excuse.
Here's some references:
1999 High prevalence of NSAID enteropathy as shown by a simple faecal test
2006 Is non‐steroidal anti‐inflammaory drug (NSAID) enteropathy clinically more important than NSAID gastropathy?
2012 Non-Steroidal Anti-Inflammatory Drug-Induced Enteropathy
2017 Non-steroidal anti-inflammatory drug-induced enteropathy
I discovered,
in this interesting paper, that phosphatidylcholine is protective of the small intestine mucosa against the injury caused by NSAIDs. It discusses the development of medications combining NSAIDs with phosphatidylcholine. So, I started taking large quantities of phosphatidylcholine, hoping it would help heal my gut. Maybe it has; my bleeding has greatly decreased.
A group in Texas has been working on bringing this concept to market as a drug since the 1990s. Their company (
PLx Pharma, Inc) have developed a PC-aspirin product called
Vazalore which has been FDA approved, and a PC-ibuprofen product
(PL1200, ibuprofen 200) which may be called Zavryl if it gets FDA approval. The most amazing thing to me, looking at their product release information, is that is does not mention NSAID enteropathy anywhere! The aspirin product is touted for it being "the first liquid-filled aspirin capsule" approved by the FDA (who cares?) and for faster platelet inhibition, which is important when using aspirin for treating heart attacks. The aspirin page also mentions decreased gastric ulcer frequency but nothing about the small intestine. The PC-ibuprofen product page has graphs showing decreased incidence of ulcers and erosions in the GI tract, but doesn't say where! This strikes me as very odd. Do they think educating doctors about the risks of NSAID enteropathy would be damaging to the marketing campaign? It's almost like there's a conspiracy of silence about NSAID enteropathy. Are the makers of NSAIDs blackmailing this startup company somehow: forcing them to keep silent about the greater threat of NSAID enteropathy?
I have a tendency to preach on this topic with the hope of preventing others from going through what I have. Please be careful with those NSAIDs!
